Living with autonomic neuropathy

Hi,
I have Autonomic polyneuropathy. It is believed to have started from a severe case of Campylobacter in 2013. It is not helped from uncontrollable T2 diabetes and excessively high BP for over 30 years.
Cheers

I was wondering what your symptoms are like minor like having a voodoo doll with my name on it and someone sticking pins arbitrarily everywhere, internally, and externally, and I’m not talking about occasional numbness

Hi,
A good analogy. I think of it as when traffic lights stop working and the ensuing traffic chaos until service is resumed.
For me it is having a disfunctional digestive system from throat to the bowel and everything inbetween, which is permanent now. There is no treatment or cure for this. Random bouts of falling to the left which are now a stumble as the brain recognises the left foot hasn't moved and counters rapidly. I notice I start shuffling my feet when I get really bad, random lapses in remembering recent information, several times with the same info, usually the simplest of things to remember, like a time or a date. Poor hand eye coordination and cognetive skills, random muscle and joint pain random chest pain simulating a heart attack. It also interferes with my blood pressure when it wants, usually keeping it higher but can also drop it suddenly, because it can.
With ANS the brain still functions it is just the signals that have glitches, signals to and from the muscles and pain recepters get corrupted, randomly which can lead to muscular twitching not understanding what the signal is to do what.
As for the neuropathy part I have the typical diabetic neuropathy with feet and hands experiencing lack of sensation like I have socks and gloves on always.
So Autonomic polyneuropathy (ANS) is every nerve in the body is effected. The only counter I have found is to force the body to do as indicated by concentrating on the job at hand. The more I cancentrate the better the signal is interpreted. I'm unable to walk a straight line when moving slowly, my counter is to walk at pace which I concentrate on and ignore all around me, then I walk straight. This is what lead me to the realisation that concentrating on what I'm doing focuses the communication between muscles and brain over riding some of the glitches. This minimises the effects of ANS until I slow up to relax, then it's back to glitching.
To sum it up some things are majorly corrupted while others are lessor random features that can periodically get out if hand.
Cheers

Comrade in arms😏

Hi,
It took me a little while to get over the devastation of this disease but I finally woke up to the fact we all die anyway, just some of us maybe sooner than expected. I try not to let it bother me or stop me doing what I want to do. There are days when all I can do is sit and wait out the daily symptoms, while other days I'm as good as I can expect and get on with life. I have had temporary paralasis from the waist down and waking to be unable to speak with no knowledge of what speach is or even words. A left leg that thinks it has taken the next step only to fall when the right leg figures it is it's turn to move. Thankfully each is only temporary and resolved in a minute or two. My digestion is pretty well stuffed and there is nothing that can be done but manage it as best I can. I push myself through these events and won't give up, I don't know how to give up, this disease is not going to define me or what I can do, despite it constantly nibbling away at me. Sadly this won't stop it and eventually I will have no option but to capitulate, but until then I do what I have to do to deal with it and other health issues I'm plagued with. I believe I'm better know than when this all kicked off having made my own play book to guide me. I refuse painkillers and don't take anything for the other health issues, but I have no option but to medicate the digestive system, and that is barely making a difference. A difference that is certainly noticable if I stop treatment, then all hell lets lose.
Cheers

Sadly,there is no going back, to our pre AN lives, and our future as we had anticipated before this “ condition” changed forever, I wonder of if I will be able go teach my new grandson and engage in all I has hoped now in question. Will I be here when he’s 12, I don’t now know, all my symptoms though now masked by drugs will progress and shorten my life and rob me of moments of joy I has anticipated, don’t want to dwell in this, don’t have a choice, one pain at a time, one day at a time. Stay strong!

Hi,
All I can do is live for today. Each day I wake I deal with the day ahead, the day I don't wake I assume I won't be having to deal with it at all! ANS has changed the way I look at my future, I'm now reluctant to take on long term projects for fear I won't get to finish them, instead opting for shorter quicker projects I at least have a chance of completing. Instead of precision work I now just fumble my way through as best I can. I'm blown away by people who tell me I have done good work when I know it is not up to my previous quality, all my life has been working to extreme precision, not being able to attain that is destroying me as I know it was possible not so long ago. I try to be happy that at least I can still work, walk, talk and be argumentative when I feel the need. Luckily I'm past the pain bought about by thinking of my plight, I'm more concerned about fitting everything in before the faitful day ANS decides it is time to stop the heart muscle because it can.
Cheers